The patient is NEARBY

I’ve been to a lot of stuff recently. Health stuff. Conferences, workshops, discussion groups. I’m hearing a lot about the need for “culture change” and “paradigm shift” in healthcare. It’s certainly needed. The system is half broken and propped up by energetic, exhausted, committed wonderful people, many of whom are working beyond their capacity, unsustainably. They feel bullied by the system or in some cases by individuals.

They need help, but somehow lack the skills to ask for it from the public, who are demanding change, and are willing to help.

But when it’s suggested that we get patients involved in the change, embedding them at every part of the healthcare and health education system, this is resisted. Yet this is the culture change we talk about. It’s ironic.

I propose an acronym to help with the shift to a true patient centred healthcare system where patients are the experts who are consulted whenever policy, curriculum or practice is designed or change implemented.

The patient is NEARBY.. It’s an acronym. yay!

Notice– is the patient present? token? how visible and valued  and voiced are they?

Empathise– what are they feeling or would they feel about what’s just been said, just happened, how people are behaving?

Ask and advocate. If the patient is there.. consult them. If not, reflect and imagine what they would say. If they are absent, represent them with your best guess.

Reflect and resist temptation to rationalise it away. Notice your excuses for not having the patient involved. this might involve –

Biases, behaviours, blaming– its ok because……..

eg.

“we don’t need them.. we do patient centredness well already.”

the noisy consumer is too much of a problem.

“this is too hard for x reasons.”

“You can’t trust patients to represent health fairly- they just want a forum for their own experience.”

“if we explain it to them, they will understand they are actually represented here. They should have trust in us”

Yell. The patients voice might require you to make a scene, be the unwitting target of reaction to change. You might feel isolated and sense being labelled as difficult or a pest. Better you than the patient!

From evidence based medicine to safe plausible medicine.

I just want to say it… evidence based medicine has had a good run, but it’s declining in what it has to offer in its current form. We need to move to another model, and it’s called safe plausible medicine.

Among the reasons for the decline of usefulness of evidence based medicine are-

1.Expense. The so called “gold standard” randomised controlled trial (RCT) is incredibly expensive to do properly

2. Strident eligibility restrictions in the modern RCT exclude most “normal” people in favour of those with virtually no other conditions, confounding health factors or medications. That’s not many people. At the end of the trial, you get something like.. this treatment had a 30% better outcome than alternatives. When you look at the study, it hardly applies to any of your usual patients. The findings apply to the lucky 3% of people who are just a little unwell, and isn’t relevant to those with comorbidity. Furthermore the conclusions are possibly invalid regarding your patients, and worse still, could be harmful given that the proposed treatment hasn’t been tested on patients like them. A stark example is those on multiple medications. Good luck with interactions between your test medication and drugs A B C and L, when your trials are done on people who are medication free, or nearly so.

3. Studies are corrupted by all sorts of financial imperatives and biases. Some are obvious, but some are very subtle. Ben Goldacre has documented many of these.

4. What we call evidence has various “levels” and sometimes they are proving the obvious. For example.. why are we still doing studies to show that exercise improves condition X? I’ve rarely seen a condition that doesn’t respond favourably to exercise. But how much exercise, or what type? Who cares. Let’s just be more active. Some low intensity, some high, whatever. Mix it up. That’ll help

5. Results often don’t get converted into policy or taken up by our culture. We are busy longing for and indulging in “more important things” that light up our addictive centers in our brain, but probably don’t benefit us much. My screen addiction is an example. I know bright light at night is bad. But I love reading and writing using technology. It’s nearly midnight as I write this, and I’m dog tired. Knowledge from the studies on sleep deprivation isn’t helping me avoid all the diseases I know result from it.

I could go on, but rather than be so negative, I have a solution. It’s called “safe plausible medicine” and I believe it has a great advantage over much of what we call “evidence based”

Safe plausible medicine goes like this.

If it’s something that is very unlikely to cause harm, and has some pretty plausible explanation for why it might be good, let’s do it. Who cares if it isn’t based on rock solid studies?

The problem is there are lots of people who care enough to block this idea.. the people who are afraid of being blamed if something goes wrong. Their fear based (flawed) logic goes like this..

”Evidence based interventions are safe” therefore “interventions with poor evidence base are unsafe and we shouldn’t recommend them”. 

This is patently untrue, but I hear it daily in my interactions with health professionals, and it reflects poor training in critical thinking.

Let’s break it down.

Statement A. Evidence based interventions are safe. This is often true. There are many good trials out there that verify favourable risk/benefit ratios of medications or treatments but there are many exceptions too. Let’s ignore the exceptions and assume that statement A is true. But to then say statement B is true because of statement A reminds me of basic logic exam questions.. A is true, B is false and B does not flow from A.

There are many treatments that have been administered for decades, sometimes centuries, but have not been properly studied. Are they unsafe? No. They are just untested. Some may seem pretty shonky. Colonic irrigation was such a treatment back in the 1980s when I was a younger doctor. Faecal transplant was potentially laughable given our scientific knowledge at the time. It’s now working (some) miracles, but has a fair way to go before we can use it safely. I can’t recommend it yet.. too much uncertainty. For me it fails the “am I confident it’s safe for most patients?” test. But it’s certainly plausible now, given our knowledge of the microbiome.

Many traditionally accepted treatments are patently now proven to be unsafe. (Mercury bath anyone?)

What IS safe and plausible is the Mediterranean diet. I don’t really need to reference this.. just google it.

What is also safe and plausible is moderate carbohydrate reduction with a caveat that if you have diabetes you shouldn’t do this without medical supervision. We have zero need for added simple carbohydrates in the diet. It’s not possible to reduce carbohydrates to zero as they exist in many foods. Moderate restriction has been demonstrated to improve health, biomarkers of disease such as inflammation, cardiovascular disease, metabolic dysfunction markers and the microbiome. Plausible mechanisms for these changes abound.

Why do people who recommend low carbohydrate diets get persecuted? Beats me. Probably the whistleblower effect. Good luck Tim Noakes, Gary Fettke, Jennifer Elliott and Caryn Zinn. You are brave. Thankyou for pushing the safe and plausible. Thankyou for trying to help reverse the tide of harm we have caused by promoting (in our ignorance) dietary recommendations which are now demonstrably wrong.

Bring on the safe plausible medical revolution. The evidence is in.. Evidence based medicine is no longer God. It still has something to offer.. big data and complex causal analysis is looking pretty good- just a little expensive, and while there’s some low hanging fruit (no pun intended) to tackle, I can’t afford to wait for the results.

Safe and plausible. Let’s do it. If you aren’t on metabolic medications*, you can safely reduce carbs, fast if you can- even overnight helps.. early tea, late breakfast, walk after a meal, sleep long, exercise regularly, connect with friends, laugh, read, avoid screens, cover up in the intense sun, but make sure you get a healthy amount without burning, eat plenty of vegetables, fibre, nuts, legumes. Eat healthy unprocessed fats, and a little meat if you must, but make sure it’s had a healthy natural life and its natural diet. Minimise processed food, especially bread and other food from engineered grains. Eat food that rots, before it rots, and food that ferments, after it’s fermented. Keep animals and avoid antibiotics and caesarean sections. Reflect, slow down and practice mindfulness. Simple, Safe, Plausible. Oh.. and don’t have too many rules!

*if you have type 2 diabetes or are on medications that alter blood sugar, you can still do dietary change, but make sure your medications get lowered as you reduce the demand for insulin or the drugs that assist it. Your doctor can organise this. See this article too- Carbohydrates for people with diabetes is not cautious

“Mental Illness” and medical students with Anxiety/Depression

So today I heard on the radio that 3 point something percent of medical students are suffering from a severe form or mental illness, which was described as anxiety or depression. A brave young doctor spoke out about her own experience. You can find the information here .

What I want to say about this is simple, and I believe vital.

That we regard “anxiety/depression” as “mental illness” is part of the problem.

Continue reading “Mental Illness” and medical students with Anxiety/Depression

Gathering of Kindness

I’ve just returned from the amazing Gathering of Kindness. Thanks so much Mary Freer, Catherine Crock, countless volunteers and countless contributors who gave so generously in so many ways!

I’ve just opened a secret message in my lanyard pouch too.. “A single act of kindness throws out roots in all directions and the roots spring up and make new trees” -Amelia Earhart.  Thanks heaps Michelle Phillips… your acts of kindness are many!

I’m writing this as a tribute to a fresh community of people who managed to spend an amazing two days together and share so much warmth, generosity, compassion, kindness and love. Mary, your enacting of “trusting” was amazing.

I am thankful for the gift from Rochelle, a Yorta Yorta elder who said to me at one point “Too much opinion!” This was an incredible gift as it encompassed, in three words, a personal struggle I have. What is this blog for example if it’s not “too much opinion?” and how do I rectify that? How much is “too little opinion?” and how can I do “kind opining” whatever that is?

The Gathering of Kindness- So many different experiences brought together! How do we meet and minimalise the effects of accidental practices of invisibling, overentitlement, opining and all those things common to Western Culture?

Thanks to Kate and others who sat silently,  gently modelling of acts of patience, forgiveness, silent deep appreciative listening and humility in spite of the possible or real disempowerment performed by those of us with “entitlement to speak”. I’d love to have sharing of “what kindness is to me” at the next gathering, perhaps with a “deep listening” session. I wish I had been more silent and observant of kindness in action, but I spent a lot of time in relationship with enthusiasm, distracted from communing with and learning from the wise. But I did my best to align my goodwill with my actions.

I was amazed by the lack of conflict, or even when there was dissent, the respect demonstrated by those present when dissent appeared. I was surprised by my own reactions to the rare statements that unintentionally risked “othering”- diagnosing or labelling others, or trivialising their experiences.

Examples were Captain Cook’s “kindness” which when pointed out, was thankfully acknowledged apologetically by the speaker (Billy) as not representative perhaps of indigenous experience of said Captain. How many times have I chosen an example with less than universal appeal when illustrating a point? When we talk about kindness, how can we better consider “to whom” and at whose expense?

I also struggled with the relationship between silence and politeness with kindness. See “Angry rebels are more compassionate than nice people”   for an exploration of this issue- (thanks Gnat Atherden for bringing it to my attention). It has me still questioning “when is it kinder to be silent, and when is it kinder to speak out?”

I was also challenged by the idea that “some people are programmed with a relative incapacity for kindness”, not because I don’t believe it to some extent, but because, (to paraphrase Michael White),  I haven’t found it to be a particularly useful thought from which to proceed. If I believe low -kindness is predetermined, and this deterministic thought diminishes my hope for change of that individual, then how does that not limit my options for interacting with him or her? I prefer the hopeful commitment; “I will learn from this person, engage responsibly and find areas where kindness can be encouraged and nurtured”, relegating “kindness is preset” to the background

And what of the thought-

“because I’m well intentioned and reflective, my acts will be intrinsically kind, as long as I’m in touch with my intentions and I’m reflective, before I act”.

How do I reintegrate the truths in this when this belief didn’t work consistently well enough for me in the past? When my “kind acts” weren’t experienced as such, I integrated “to check on one’s actions is essential” How can I seek feedback from the recipient without it being seen as a conditional act of “self gratification”? Maybe I’m too attached to the checking and I need to dust off “good intentions guarantee the actions” a bit!

Sorry too, Billy, that I failed to empathise with your enthusiasm about mirror neurons because I was unkindly judging this as “science colonising ancient knowledges”!  How dare I use deconstructionism in such an unkind way! As a consequence I ironically missed this opportunity for the warm/fuzzy/oxytocin laden experience of mirroring Billy’s enthusiasm. To miss this was a no-no for me at a Kindness Gathering!

The whole weekend was so positive and kind, it overshadowed these challenges with the hugeness of experience of connectedness, common goals, we-ness, commitment, love, and authentic generosity. This was/is a very special gathering, and in its steadfastness to propagate, I’m sure the inspiration, thoughts, hopes and commitments it has created will infectiously grow in most (dare I say all?) who attended.

It really was kindness in action. I was “elevated to tears” by Rachelle’s gift to Cathy Crock, moved profoundly by Munjed and I was silently appreciative of the love in action by so many people. Mary Freer and Cathy Crock, thankyou so much for starting this! In loving appreciation of all “kindness vectors” (OMG that seems a bit like “velociraptors”!), Thankyou!

 

A model of apology- 6 steps.

I wrote this piece about apology many years ago for several friends/acquaintances whose relationships had ended precipitously. While they were male, I don’t necessarily think this is a gendered issue. I’ve toned it down a bit as my original was really preachy!

Dear mystified male,

If you feel misunderstood by and rejected by your ex-wife, your children, or your former friends who have either drifted away, or suddenly and dramatically rejected you, this might be for you. Maybe, none of it was your fault! What if the FAULT THING is a distraction; a huge distraction to prevent you from doing something positive about your plight? Continue reading A model of apology- 6 steps.

Abbott in favour of same sex marriage?

Says Tony on Friday-

“While there is a little difference between the legalities …..  there’s no difference in the morality”

Yay!

Oh, wait.. he was talking about bombing over the border in Syria. Something that’s illegal under international law.

So we can’t override the law with a moral argument when it’s about love between people but we can to justify acts of lethal violence!

Help!!

Leadership, entitlement, bullying, homophobia and racism

I think we have a problem, and it’s “leadership”, and I think it can have toxic results unless we are very careful with the concept.

Leadership is only harmonious if everyone agrees, which is rare. Usually there is reluctant compliance from “followers”.

This means dissent must be over-ruled, no matter how small or large, if you believe that non-compliance is a threat to your authority as a leader. Power over-rides respect for different values.

Which means you might have to make a captain’s call. Tony Abbott did this over same sex marriage. He said “I am the leader, I had to make a call, and I think this is the best call” (Top marks for self-referentiality!)

There is an alternative view, but when you have a strong lashing of entitlement it wouldn’t be front and centre. It is “I am the leader. My job is to empower, negotiate, reconcile and synthesise. If this isn’t possible I must honor and respect different positions and advocate for one voice-one vote. That is my duty”

Entitlement to make a call in the face of widespread opposition is similar to the booing of Adam Goodes. “We can boo anybody we like, for whatever reason and reserve the right to boo even when it has become symbolic of racism”

The problem here, I think is similar. Sense of entitlement over-rides our societal duty to each other to  minimise harm, maximise goodwill and move as much as possible from

intolerance (“you are other and you cause me fear, disdain or disgust”)

to

tolerance (you are other and despite negative feelings you may live alongside me if your impact is minimal)

to

appreciation-despite-not-understanding. (you bring a lot to our society. I don’t feel negative but I just don’t get you)

The latter state is a step towards

appreciation of difference. (thanks Michael White*)

“You and I are same and other. Your thoughts, beliefs, culture are amazing. Let’s work together to bridge difference and foster goodwill, and societal benefit”

Something Tony has occasionally mouthed, but rarely enacts. His captain’s call from entitlement is hurting same-sex lovers and de-values his colleagues considerations and heart-felt positions, and his call on climate change is hurting the world.

Oh, and bullying? Yep it’s integrated in the process.

Fortunately connectivity in the modern world enables an alternative conversation and collectively we make small steps despite patriarchal restraints.

And (cynically), fortunately the progressive corporate take-over of government (see our TransPacific Partnership ‘agreement’ push) seems to be empowering us to think outside  leadership structures.

* Practice notes: Couple therapy” “Urgency for sameness” or “Appreciation of difference” Michael White

Healthy food. Trying to reach the stars, but ending up with heads in the clouds.

cloud3
Here’s a cloud. It has little to do with this post.

No, I refuse to rave on about how bad are our current dietary guidelines or the government’s Health Star Rating fiasco. No I won’t rave. David Gillespie has done the raving for me here (thankyou David) Continue reading Healthy food. Trying to reach the stars, but ending up with heads in the clouds.

Transition through the middle place

Prompted by witnessing a person in the education world flip between “our students are adult learners- it’s their fault if they can’t organise their education schedule” to “don’t burden the poor little things with too many resources- we have to stage their education in developmental steps” I found myself thinking about what construction might lie between these two extremes. What is the middle place? And how quickly do we transition through it without noticing? Continue reading Transition through the middle place

Empathy: Dutton, Abbott, Brandis, Hockey, Triggs and Nasir

I’m moved to write after reading and hearing so much about the Rohingya refugees.

So here we are, caught with leaders so lacking in demonstrating empathic skills that they are self righteously exhibiting their views without much of an inkling of how they are being perceived as “out of touch” or downright cruel. I’m sure they feel really misunderstood.

Unfortunately, I believe they have a responsibility to shed their experience of being victimised and to act both compassionately and in the interests of Australia. The possibility that both can be achieved simultaneously seems to elude them – Continue reading Empathy: Dutton, Abbott, Brandis, Hockey, Triggs and Nasir